Hi Mavis
Thank you for your reply,must admit did not realise were the money went concerning,the burial fee.
I hope your not offended with any of my comments,it is just a general observation,I seem to be hitting funerals a lot lately,at an age were you go to more funerals than weddings:-S
I do envy people who have a faith,as it must be a great comfort for them and there loved ones,so yes I can see the point to a service were the local parish priest has knowledge of the person who has died.My own mothers funeral was conducted by a priest who was bought in last moment,although he did not know my mother,and it was an excellent service,very much on why we are here on this earth.
I too feel it is a good thing to plan and know what sought of service,you would like,it is a subject no one wants to talk about,I never realised until recently that you can have any form of a service at a cremation,I assumed because its like a church building,it had to be a church like service.
Never too old to learn new things. love Eve
Hi Everyone
We have snow some were,according to the weather forecast,it,s not in my little corner.
I think it,s time to find the Christmas decorations!!!!
Tom I think you have survived two dish washers,because there is so much more to you,that your young bride,over looks the little hiccups.:-)LOL
I love Christmas,but it does bring home,how loved once are so far away,in previous years its always been us who was away,usually in Portugal,in all the countries I have been in at Christmas,it,s the British who go over the top,other places are more low key,so this year i am going to make a determined effort,not to be standing in long queues,and not rushing out last minute because I have forgotten some things.I have written my letter to Father Christmas,:-S Love Eve
Hi Claudette
I am so glad you posted to Chrissie,and I am so glad I read your post,one because I hope your post gives Chrissie some strength,and two you have made me realise once Slims not on the trials any more we will be able to travel again in our campervan,go back to are way of life.I know I should just be grateful that he is still here ,but we both miss travelling so much,as it was a big part of are lives.
My husband has just asked me what I wad reading,so i read your post out to him,it makes us both realise with a little bit of luck the next ten years will be better,because you appreciate them more when you know time is not on your side. thank you again for your post .Eve
Hi Bridget
Glad the treatment is not to harsh on you,how many cycles will you do before you have test to see if its working????
I agree with you about the blood test,the only thing that convincers us now is BMB,Slims blood results have always been good,and kappa lightchains do not show true readings. Slim does not mind BMB just finds it a little bit uncomfortable last time the doctor thought he had fallen asleep .LOL
He is sleeping for England at the moment,we are like passing ships in the night,he sleeps in the chair alot,try as much as I can to get him to bed,says he is more comfortable in chair!!!,starts watching tv next minute asleep,but when he goes to bed wide awake.
As for hair,those clippers might just come out yet,it loooks so odd with his dark bushy eye brows,but after reading on here,you saying wait until he is asleep,I am not allowed to touch them at all!!!!LOL,may be thats why he will not go to bed.;-)Love Eve
Hi Shirley
Glad to hear you are managing to get out,have they given you a portable one,it makes all the difference being able to move about,out of the 4 walls.I have seen people on planes with the portable tanks,so there will be no stopping you soon.8-)
You sounded if you enjoyed your Christmas outing,turkey and all the trimmings?????.We do not have anything like that in East Kent,would have to travel 80 miles for the nearest support group,so this site helps us the most. Just let Stephen do the heavy bits,as a carer I can say it,s awful watching someone struggle,I try not to fuss watching Slim sometimes but it is hard,I get scared to go out some times,as I know he waits for me to go,and starts doing things!!!:-P my fear is he will do more damage to his bones.So be kind to Stephen,Love Eve
Tom
What a lovely photo,that,s what it,s all about kids,must admit I enjoy it more with the grand children,I think when it,s your own children you so busy running yourself ragged,you get tired before Christmas comes.
Have started shopping for Christmas so getting in the mood the sun is still shining on our little part of Kent8-)Love Eve
Dear Gina and Sister
So sorry,even when it comes and you have prepared yourself for the worst it still comes as a blow,you have a lot of good memories to treasure,and i am so glad you got your mum home to die,that in it,s self must be a great comfort to you both.All my love Eve
So pleased for you Carol it must be like father christmas delivering a present early,:-)
Take it easy and look after yourself and enjoy this moment love Eve
Hi Chrissie
I stand by what I said last time involve your daughter-in law,she just might turn out to be the daughter you never had,you will not know unless you give it a try,no one can manage on there own,take my word for it,I am very much an independent b—-r,but my son-in-laws came up trumps.
Get SKYPE I talk to my daughter in nz all the time,would love to see my Kiwi grand children,but not at the cost of Slims life,if you have the money pay for him to come over,it,s the person not the country that,s important.
I cannot say enough,if you feel there is not much time ask the question you will get an answer,Min told me that once, I was just to scared to ask,so all silly things were going on in my head.
I look at Slim now and see a different person than 6 months ago,so do not give up hope Eve
Hi Min
The nurses are very good and never seem to stop,I asked about the strike today and the answer was no we cannot strike!!!!!!
I also asked how long they would have to work for there pensions all of them said to 68 years old!!!!!!
I think at the age of 68 working in a job like that they would not survive it without making many errors.
My main complaint was lack of co-operation between departments.I have been told to expect a reply in January!!!!!In my earlier job i dealt with complaints,i found if you dealt with it and nipped it in the bud stage,it was over,but once you explored it,you opened up a whole new set of problems,and wasted a lot of time in meetings,with no one leaving happy,and it looks if this is going to happen!!!!what ever happened to common sense?
Will see what Friday brings. Love Eve
PS Dai blood clots can develop any were in the body,but most common in legs.that,s why they like you exercising your body.
Well Min this is the time to find out!!!!you do not know what you can do until you try.!!!!
Dishwasher!!!! for a present,who was that for,any thing to get out of standing at the sink!!! my my Tom hang your head in shame,It,s nearly as bad as my hair removal gadget,its taken him years to live that one down LOL Eve
Hi Dai
The cost for Slim is topping £3000 as now in 8th month,but if you compare that he was in ITU for 10 days at a cost of £2000 per day its a no brainer.
Slims history is grandmother plus mother died of pulmonary embolism,his mother a year September age 85.
I have had some response to my complaint,went for start of 6 cycle today and HALLELUJAH HALLELUJAH,even the nurses were beaming drugs were there Velcade and Zometa,but they had forgotten one drug,the nurse took great delight in pointing this out to the pharmacy,we said we would collect on Friday,rather than wait 2 hours LOL. love Eve
Hi Everyone
Poor Slim,that,s what I hear all the time Tom,i always seem to come out the baddy,I just reckon he does not know how lucky he is being married to me!!!!!
but there again he can not remember it!!!! LOL.
the other day he asked to see the photo,s so my daughter showed him,and for some reason he thought he was standing up(we got married in ITU),I still have not been brave enough to look at the video as even my roughy toughy son-in-law could not watch it.
He says he has got grounds for divorce,as he does not remember it!!lol
he is a bit scared to go to sleep in case I attack his Denis Healeys!!!!
I could do a John Bobbitt on him. love Eve:-P
Hi Helen
Slims is a long story,so will keep it short he was on CTD myeloma trials, and three months on,after going to A&E on Easter Saturday and sent home,Emergency admission on Easter Monday 10 ITU with Septic Pneumonia and 22 over all in hospital.
he stared the trials again 2 weeks after leaving hospital,did 6 cycles only to find Myeloma had increased to 80% in bones.Started Velcade and is working.
Through out all this he has injected himself everyday 100 mg clexane.Being on Clexane will stop any blood clots forming,I think you have to hit a balance your mum needs to keep her body moving plus rest.as I said 6 months is the least you should have on Clexane.
Most of these chemo drugs are known to form blood clots,I think it should be the norm to have blood thinning drugs,because as in Slims case there is extra damage to his lungs,and SCT is now in question.I suppose it all comes down to cost a Clexane injection cost £15.my Gp was not keen to prescribe because of cost,took a telephone call from the hospital,it all seems a battle over money.
As I said try not to worry your mums on the right treatment ,it did not stop Slim having the CTD,only came off it for a short. time because he was so ill,but today he is much better and put on weight,and ev eryone says how well he looks,some even tell him they thought he would not make it,that,s how bad he was.
The hospital are so pleased with his progress,and my new GP said she has never seen anyone improve so much with the damage he has,so at the moment it.s all good news. Love Eve
Hi Chelle
We all have days like that,because you get desperate for something to work, I must admit to being a pill popper ,mainly to keep my emotions under control,It cannot help your husband to see you so upset,so my advice is go and see your doctor,get some help,because you have to be the strong one at this point in time.
I am sure other people will reply to you who know more about other treatments,there is Susanna who,s husband has had Myeloma for 15 years,so do not give up hope,try to remain strong for hubby. Love Eve
PS.Come on here,it helps some time to get it of your chest.Eve
